Why speak out?

Martin Luther KingDay 15: Dementia Awareness Month 2014

I continue to speak out because currently there are not enough people with dementia being asked to speak at or attend events, or being actively involved in things about them. Perhaps by being a role model, and challenging the status quo, it will bring about change. During Dementia Awareness Month, with the theme of dementia-friendly communities, it would seem logical to me that people with dementia all over Australia would be included and fully involved. It seems I still have so much to learn…

  1. It is imperative everyone understands the human cost of dementia
  2. So you can walk in my shoes
  3. To break down the myths of dementia
  4. To help reduce discrimination and stigma
  5. Nothing ‘about us, without us’
  6. Educate and raise awareness

My willingness to speak out has been fuelled since being diagnosed with dementia, by the fact that much of our care feels symptom based, and there is a very thin veil between people with dementia being treated with dignity as opposed to being treated like morons.

I believe nothing will change until we recognise that it is imperative we all understand the human cost of dementia.

The other reason for speaking out is the only way you can understand me is to walk in my shoes; if I don’t invite you into my world, then how can I reasonably expect you to know what it is like? Since being diagnosed with dementia, I have been told I can’t possibly have it because I can speak, but you ‘sound and look so intelligent’, or that I must be lying about the diagnosis for notoriety. I’ve even been told by a well-meaning (?)  Registered Nurse that no matter what I do, it will get me in the end!

I hope by speaking out I can break down some of the stereotypes and stigma about a diagnosis of dementia. Christine Bryden, Richard Taylor, Helga Rohr, and many others living well with dementia have said the same. Living well with dementia, seems to be a reason why many people doubt we have dementia. How extraordinary… if we were doing well with cancer, everyone would applaud us, and no-one would question the diagnosis.

It seems incredulous to me that I and many others I know constantly need to justify the diagnosis of dementia, and that living with it well is not seen as more positive. If I had sustained a brain injury through a car accident or a stroke, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the extent of my injury questioned. And, if my success was significantly greater than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently to bring about a more positive result.

I also speak out because there is also a gross under representation of people with dementia deciding our care and futures. In Scotland there is a very active group of people living with dementia who set up a group 12 years ago called The Scottish Dementia Working Group who are advocates for their own outcomes, and they have a slogan, nothing about me without me. The slogan came from the disability sector, but has been used globally in the dementia sector by people with dementia for at least 12 years now, although it is only just beginning to be realised.

Those of us living with dementia who are speaking out also want to educate others what living with dementia is really like, and to raise awareness about it. We want to reduce the stigma, discrimination, isolation and exclusion that has been the experience for far too long for people with dementia. We want to break down the myths and stereotypes, and let other diagnosed with dementia it is possible to live better lives than we have been prescribed upon diagnosis.

8 thoughts on “Why speak out?

  1. Kate, I do not want just to talk about, I want to shout about the inequality of funding given to dementia versus cancer in Australia. If we could obtain sufficient funding, we could also advocate a specific colour, raise awareness and education of dementia, rally manufacturer’s to promote and produce appliances in our chosen colour in addition to donating a nominated amount of sales to dementia. Hold afternoon high tea’s for ladies (and gentlemen), have a ribbon and flower day. Or perhaps we could come up with something with a different attention catching aspect. I have been a carer for my husband who was diagnosed with frontal lobe dementia January 2102. Unfortunately I am now no longer able to care for him at home and he has just recently transferred to a residential care home. Whilst caring for my husband I was also diagnosed with Parkinson’s disease March 2016. Like dementia f,unding for Parkinson’s does not equal funding for cancer. Like yourself I am a great admirer of Ita Buttrose. As her friend and colleague, could you please ask her (on my behalf) why our funding is so much below par with cancer and how we can try to address the matter. Thanking you for your time. Kindest Regards Ellen


    • Thanks for connecting here Ellen, and apologies I did not notice your comment earlier. Re asking Ita, it is not up to her regarding the funding disparities, it is up to our researchers, advocacy organisations and governments to ensure funding for dementia care and research is given better propriety. Speak to your local politicians, your local advocacy organisations, anyone you can! But do speak out about it, as perhaps by all speaking out together (individually, collectively or any other way), perhaps we can change things.


  2. I saw a television commercial today in ~ prime time about the Dementia Awareness month and telling people that dementia is more than just one instance of forgetting something. It was a good ad.


  3. Kate! Wonderful post. I live in Green Bay, Wisconsin, USA. My husband has FTD. Our church has a church for people with disabilities called Able Church, because God sees us all as able. My husband has been able to read some of his thoughts for them. I am starting to teach a class for the general church on Grace-filled aging where i hope to open the discussion of dementia care and how our society needs to include and support the person and the caregiver. The book “Still Alice” by Lisa Genova, changed my outlook forever. I had to learn to think of what my husband is going through. Green Bay is just starting on the road to setting up a Memory Cafe and Dementia Friendly Community. Thank you, thank you for your work. You may never know how much it means to people–but I am here to tell you—you are doing a HUGE service! Christy


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